The Numbers Game

At 19-years-old I was on the cusp of full-blown adulthood, something I’d been looking forward to for as long as I can remember. My whole life had been spent looking ahead, counting down the days until the next big milestone that came with getting older.

  • I couldn’t wait to drive at 16
  • I was overjoyed at being able to purchase a rated R movie ticket by myself
  • At 18 I could buy lottery tickets (not that I ever did) and I left for college

I was prepared to spend the next two years of my life anticipating the day when I could walk into a bar and order something from the non non-alcoholic side of the menu. But then cancer hit, I was rushed to the hospital and I suddenly found myself wishing I could turn back the clock to seventeen, sixteen…

Hell, I’d even take twelve and the awkward middle school years again.

clownsBut instead I was 19-years-old, a quasi-adult stuck in the world of pediatrics. The walls of 11-south were covered with pictures of puppies, kittens – whatever small animal you could think of. There were clowns that came door-to-door, bingo prizes meant for eight-year-olds,  and the creepy cheery recorded voice of a toddler announcing your destination whenever you got on the elevator.

If living like a nine-year-old wasn’t bad enough, the revolving door that was my hospital room brought a never-ending supply of doctors, each with their own bit of bad news that could top the one before and made me want to hide under the covers.

Unfortunately, I was ten years too old for that behavior, and I couldn’t rely on mommy and daddy to make all of the decisions for me. Because I was of the right age, it was my job to pay attention to every little thing they said because it was also my job to sign consent for every treatment and surgery.

How many college students do you know that have a living will and advance directive? Shit was getting real.

Instead of checking out and taking things day by day, I had to be on my toes. I had to be ready at all times in case a doctor came in to speak with me while I was alone. I’ll tell you, nothing tests your ability to be assertive and speak up quite like asking a doctor to come back later so that your mom could make it back from the cafeteria to hear news.

img_0038So at nineteen, after a year of peak adulthood for me in college, I was firmly in the gray area that exists for young adult cancer patients. Too old for pediatrics, too young for adult oncology. Which is why Hopkins initially took two hours to decide where I would end up once arriving in Baltimore.

But Jillian, pediatric care is often more aggressive than adult oncology treatment, you should be happy that you were given the best treatment available.

I am. But I’ve also seen the movies. I knew there was another…perk…of being a peds patient. One that was kept firmly out of reach.

My wish.

The Make-a-Wish Foundation exists to arrange experiences, or “wishes,” to children facing life-threatening medical conditions. Children up to the age of eighteen.

AKA me three months before diagnosis.

So I was wishless. Living on the pediatric floor hearing about all the wonderful and amazing experiences that exist, but I couldn’t plan my own. Sure, I had my short-list prepared in the off-chance that the wish genies would make an exception for little old me, or that I’d find an adult wish organization who was actually still in business or had a working website, but it wasn’t meant to be. Nothing.

Taken from me before I could (in the words of John Green’s The Fault in Our Stars) waste it on a trip to Disney World.

*Editors Note: never in a million years would a wish spent on Disney be considered a waste. Just an example of one of the many issues I’ve had with Green’s book/movie post-diagnosis.*

The game of numbers chewed me up and spit me out, and I was left with all of the peds and none of the wishes. Instead, I was left to wallow in my boredom in the hospital and countdown the days to the newest, cancer related milestones that somehow appeared before the big TWO-ONE.

 

Day five of chemotherapy, day four of chemotherapy, day three, day two…

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